MD Support Group

beckdildal (Jun 21, 2009 5:56:51 PM)
hello and welcome to md support chat:0)

Brenda (Jun 21, 2009 6:07:28 PM)
(This user has entered MD Support Group)

beckdildal (Jun 21, 2009 6:07:58 PM)
hello Brenda, how are you doing today?

Brenda (Jun 21, 2009 6:08:26 PM)
hi, ok how about you?

beckdildal (Jun 21, 2009 6:09:03 PM)
I'm doing okay too.

Brenda (Jun 21, 2009 6:09:25 PM)
have you been to the cahats before?

Brenda (Jun 21, 2009 6:09:28 PM)
im new

beckdildal (Jun 21, 2009 6:10:02 PM)
Yes, i have been to chats before. I have FSHD and I am one fo the cohosts on this chat.

beckdildal (Jun 21, 2009 6:10:27 PM)
Welcome to md support chat. Do you or someone you know have md?

Brenda (Jun 21, 2009 6:11:03 PM)
ya me,fairly recently

Brenda (Jun 21, 2009 6:11:20 PM)
they think it may be cmd

Brenda (Jun 21, 2009 6:11:31 PM)
but they are still checking

beckdildal (Jun 21, 2009 6:12:06 PM)
What type of symptoms do you have with cmd?

Brenda (Jun 21, 2009 6:12:12 PM)
they are checking mg and possibly mmd

Brenda (Jun 21, 2009 6:12:50 PM)
i have swallowing lung cardi lump on my thyroid

Brenda (Jun 21, 2009 6:13:06 PM)
and of coarse mucle weakness

beckdildal (Jun 21, 2009 6:13:35 PM)
sounds like quite a few systems are involved.

Brenda (Jun 21, 2009 6:13:48 PM)
diegestive also

beckdildal (Jun 21, 2009 6:13:56 PM)
did you hear about these chats through myMDA group?

Brenda (Jun 21, 2009 6:14:21 PM)
yeah i guess thats why it took 20 yaers to fianally get to the bottom of it

Brenda (Jun 21, 2009 6:14:29 PM)
ya

Brenda (Jun 21, 2009 6:14:53 PM)
im going to mayo through the mda

beckdildal (Jun 21, 2009 6:15:07 PM)
that's a good place to go

beckdildal (Jun 21, 2009 6:15:26 PM)
i hope they can sort it out for you there

beckdildal (Jun 21, 2009 6:16:00 PM)
iwas diagnosed first by muscle biopsy and emg then by DNA testing.

Brenda (Jun 21, 2009 6:16:21 PM)
do you know if i am supposed to o to them for everyything or am i supposed to be going to allthese diff specailists through my reg doctor

Brenda (Jun 21, 2009 6:16:44 PM)
ya i had muscle biopsy and emg

beckdildal (Jun 21, 2009 6:16:48 PM)
i think it depends on what your insurance will pay for

Brenda (Jun 21, 2009 6:17:12 PM)
but they arent sure ye what exact kind

Brenda (Jun 21, 2009 6:17:41 PM)
oh ok so am i supossed to keep them udated

beckdildal (Jun 21, 2009 6:17:53 PM)
if you are referred by the muscular dystrophy clinic i would recommend going to the doctors that refer yu to.

beckdildal (Jun 21, 2009 6:18:26 PM)
when you go to a specialist you can sign a paper requesting that they send any information to your primary care doctor

Brenda (Jun 21, 2009 6:18:42 PM)
this was through my doc, i had another bad ekg and she is sending me back to cardiologist

Brenda (Jun 21, 2009 6:19:29 PM)
oh ok thats cause ve been confused about that

Brenda (Jun 21, 2009 6:19:34 PM)
thanks

Brenda (Jun 21, 2009 6:20:55 PM)
im supposed to go back to mayo but there was some confusion about mda visits in summer

beckdildal (Jun 21, 2009 6:21:27 PM)
how many times have you been to the mda clinic so far?

Brenda (Jun 21, 2009 6:22:08 PM)
just the once, i was seeing a nero who sent me to another spec nero who sent me to mayo

Brenda (Jun 21, 2009 6:22:49 PM)
the second nero said he thought it was prob a form of cmd

beckdildal (Jun 21, 2009 6:22:56 PM)
whoever treats you you need to have them send their recommendations to your other physicians. they should have a form you can fill out.

Brenda (Jun 21, 2009 6:23:23 PM)
ok, thanks i really appreciate it

beckdildal (Jun 21, 2009 6:23:56 PM)
Did the mda clinic ask you to make a followup appt in 6 months?

Brenda (Jun 21, 2009 6:24:45 PM)
no i as suppossed to get apt for full 3 hr mg test for the next apt

beckdildal (Jun 21, 2009 6:25:29 PM)
ok, when are you going to have that done?

Brenda (Jun 21, 2009 6:26:47 PM)
im really not sure how its all supposed to work but i have a 20 yr old daughter that i would like to reassure that when she gets older or has a family it'll be ok

Brenda (Jun 21, 2009 6:27:01 PM)
actually 22

beckdildal (Jun 21, 2009 6:28:17 PM)
that is understandable. I'm sure that will be the next step one you know more.

Brenda (Jun 21, 2009 6:28:19 PM)
in process, i keep getting sent to spec by my doc, cardiologist, gastro, opthamologist and so on...

beckdildal (Jun 21, 2009 6:29:00 PM)
I also see different specialists such as pulmonary, cardiology, rehab.

Brenda (Jun 21, 2009 6:29:17 PM)
tryin to find energy to keep running to all these right now but i think im going to contact my contact with mda on mon

beckdildal (Jun 21, 2009 6:29:50 PM)
It must seems like you are at the doctor every week!

beckdildal (Jun 21, 2009 6:30:31 PM)
Do you have someone that helps you get to your various appointments?

Brenda (Jun 21, 2009 6:31:20 PM)
well i kinda got backed up my daughter moved back in with fiance and mly husbands father had bad year with alzhiemers and passed away so we were tryin to travel and deal with that

Brenda (Jun 21, 2009 6:32:23 PM)
yea i still can drive when im up to it but my husband can now , he just retired from 24 yrs in navy

beckdildal (Jun 21, 2009 6:32:27 PM)
I understand completely as my father hasl has alzheimer's and we had to put him in a secure unit this past year, and my mom has md also, so she now has a caregiver.

Brenda (Jun 21, 2009 6:32:56 PM)
wow thats alot to handle

Brenda (Jun 21, 2009 6:33:48 PM)
i just kinda stepped back from my stuff and tryed to be there for my husband

beckdildal (Jun 21, 2009 6:34:09 PM)
it is along with work, but things have gotten alot better this year. Plus this is all new for you and I have been dealing with my diagnosis fo the past 25 yrs.

beckdildal (Jun 21, 2009 6:34:34 PM)
you can only do that for so long and then you have to concentrate on yourself.

Brenda (Jun 21, 2009 6:34:42 PM)
i lost my father 17 yrs ago to cancer

beckdildal (Jun 21, 2009 6:35:18 PM)
my father is 88 and i went to visit him today. he doesn't know who i am anymore.

Brenda (Jun 21, 2009 6:35:24 PM)
i started haveing bad symptoms after my daughter was born

Brenda (Jun 21, 2009 6:35:33 PM)
aww thats tough

Brenda (Jun 21, 2009 6:36:00 PM)
my father in law didnt know us at all that last time we went u

Brenda (Jun 21, 2009 6:36:17 PM)
*up

beckdildal (Jun 21, 2009 6:36:40 PM)
i went to a genetic doctor when i was diagnosed

Brenda (Jun 21, 2009 6:36:56 PM)
all u can do is tell them your there and you love them and hope somehow they now

beckdildal (Jun 21, 2009 6:37:05 PM)
he was able to explain the chances of passing on the gene etc.

beckdildal (Jun 21, 2009 6:37:31 PM)
right. i can't stop going just because he doesn't know me.

Brenda (Jun 21, 2009 6:37:36 PM)
i dont know if retired military insurance would pay for that

beckdildal (Jun 21, 2009 6:38:13 PM)
is tha tricare?

Brenda (Jun 21, 2009 6:38:22 PM)
its hard but good hug them and hope they know

Brenda (Jun 21, 2009 6:38:27 PM)
yeah

beckdildal (Jun 21, 2009 6:38:49 PM)
iwas thinking about your daughter, especially

Brenda (Jun 21, 2009 6:39:00 PM)
thats my concern

beckdildal (Jun 21, 2009 6:39:48 PM)
Are they doing any DNA testing for you?

Brenda (Jun 21, 2009 6:40:23 PM)
i have been dealing with the symptoms long time , althugh the last 2 yrs ive gottin alot worse, i want to know for her

Brenda (Jun 21, 2009 6:40:28 PM)
not yet

Brenda (Jun 21, 2009 6:41:15 PM)
she is actually syin shes not having any kids till i know

beckdildal (Jun 21, 2009 6:41:57 PM)
i was diagnosed before my mom ever was

beckdildal (Jun 21, 2009 6:42:22 PM)
her symptoms were mild up until she retired.

Brenda (Jun 21, 2009 6:42:51 PM)
right now no one in my fam has any md that we know of

beckdildal (Jun 21, 2009 6:43:06 PM)
It might be a good idea to wait and see so she knows what she is dealing with

Brenda (Jun 21, 2009 6:43:42 PM)
but my mom was just diagonised with hasamotos and i found out my father had large goiter removed when he was a youg teen

beckdildal (Jun 21, 2009 6:44:12 PM)
do they think that the problem with the thyroid is a separate issue?

Brenda (Jun 21, 2009 6:45:29 PM)
well i have had when since as long as i can remember

Brenda (Jun 21, 2009 6:45:46 PM)
a large lum on my thyroid

Brenda (Jun 21, 2009 6:46:36 PM)
they told mei had it when i wet 20 yrs ago checked myt3 and t4 and sa they were ok

beckdildal (Jun 21, 2009 6:46:44 PM)
as long as your doctors are aware of your family history.

beckdildal (Jun 21, 2009 6:47:17 PM)
it's a simple blood test that can be repeated

Brenda (Jun 21, 2009 6:47:22 PM)
not yet im jut now tryi to get more fam history

Brenda (Jun 21, 2009 6:47:49 PM)
oh yeah my doc did as soon as my mom was diagonosed

beckdildal (Jun 21, 2009 6:48:20 PM)
have you had a complete physical with your primary doc? that is important too.

Brenda (Jun 21, 2009 6:48:31 PM)
but she is sending me to endro bcuase u get false neg on t3 and t4 tests with a lump

Brenda (Jun 21, 2009 6:48:47 PM)
yeah i se her reg

beckdildal (Jun 21, 2009 6:49:25 PM)
sounds complicated

Brenda (Jun 21, 2009 6:49:50 PM)
all my grandparents are passed so its hard to get anly info, just ound out my mothers unle was bound to wheelchair but we dont know why

beckdildal (Jun 21, 2009 6:50:43 PM)
we had a big study done in our family before the great aunts and uncles passed.

Brenda (Jun 21, 2009 6:50:43 PM)
my fathers ad pssed when e was8

beckdildal (Jun 21, 2009 6:51:15 PM)
they gave blood from all over the country, but it was before the DNA testing was available.

Brenda (Jun 21, 2009 6:51:29 PM)
well thy are checkin me for mg which involves throid

beckdildal (Jun 21, 2009 6:51:36 PM)
ic

Brenda (Jun 21, 2009 6:51:41 PM)
reakky

Brenda (Jun 21, 2009 6:51:49 PM)
really

Brenda (Jun 21, 2009 6:52:07 PM)
also mmd seems too

beckdildal (Jun 21, 2009 6:52:32 PM)
no thyroid invovement in my type of md which is FSHD

Brenda (Jun 21, 2009 6:52:33 PM)
my lung colapsed in my 20s

beckdildal (Jun 21, 2009 6:52:48 PM)
are you on a vent?

Brenda (Jun 21, 2009 6:53:03 PM)
what knd is that

Brenda (Jun 21, 2009 6:53:59 PM)
no i was in hosp for two weeks it wouldnt heal they were going to take the tops of bot my lungs becuase they were so weak

beckdildal (Jun 21, 2009 6:54:02 PM)
facio-scapulo-humeral dystrophy which affects the muscles of the face, shouder blades and arsm, but there is also more generalized involvement.

Brenda (Jun 21, 2009 6:54:37 PM)
is your sight good, i hope

beckdildal (Jun 21, 2009 6:54:39 PM)
i have foot drop, so i wear braces

beckdildal (Jun 21, 2009 6:54:54 PM)
yes, i have good eyesight for my age.

Brenda (Jun 21, 2009 6:55:11 PM)
good im gad

Brenda (Jun 21, 2009 6:55:15 PM)
glad

beckdildal (Jun 21, 2009 6:55:56 PM)
Is your hubby supportive of you inall of this?

Brenda (Jun 21, 2009 6:56:21 PM)
i dont have foot drop yet i dont think i just walk into things alot and cant get up flight of stairs with out sitting down

Brenda (Jun 21, 2009 6:57:21 PM)
well i like to say yes , but i also think hes kinda in denial

beckdildal (Jun 21, 2009 6:57:28 PM)
Do you get tired easily?

Brenda (Jun 21, 2009 6:57:33 PM)
oh ya

Brenda (Jun 21, 2009 6:57:50 PM)
if i even go to store im done for the day

beckdildal (Jun 21, 2009 6:58:11 PM)
housework must be hard to do as well?

Brenda (Jun 21, 2009 6:58:22 PM)
i have to stop and reat doing anything around housee

beckdildal (Jun 21, 2009 6:59:09 PM)
i went out and worked outside yesterday and had to sleep in today.

Brenda (Jun 21, 2009 6:59:16 PM)
sometimes i feel like i cant even talk

Brenda (Jun 21, 2009 6:59:44 PM)
ya

beckdildal (Jun 21, 2009 6:59:55 PM)
does it fell like you are out of breath?

Brenda (Jun 21, 2009 7:00:03 PM)
ya

beckdildal (Jun 21, 2009 7:00:12 PM)
lot going on

Brenda (Jun 21, 2009 7:01:13 PM)
ya and i reallly tryed hard over the years to do all i had to do him being deployed and being away from fam

Brenda (Jun 21, 2009 7:01:24 PM)
family

beckdildal (Jun 21, 2009 7:01:41 PM)
good thing he is back now when you need him more

Brenda (Jun 21, 2009 7:01:57 PM)
its just harder and harder to to the simple daily stuff

beckdildal (Jun 21, 2009 7:02:11 PM)
it may be time to get some help if you are able to

Brenda (Jun 21, 2009 7:02:17 PM)
ya we did 24 yrs thats plenty

beckdildal (Jun 21, 2009 7:02:50 PM)
you might talk to your hubby about getting a chore person

Brenda (Jun 21, 2009 7:03:23 PM)
ya i gotta call, i just am so used to taking care of others that i have to learn to take care of me now

beckdildal (Jun 21, 2009 7:03:28 PM)
maybe there are volunteers through the military or VA who could help?

Brenda (Jun 21, 2009 7:03:49 PM)
he is home now hes retired

beckdildal (Jun 21, 2009 7:03:50 PM)
i think it is really time for that

Brenda (Jun 21, 2009 7:04:29 PM)
but i dont think he relizes how bad it is cause hes so used to me being tough and shovin thruogh

beckdildal (Jun 21, 2009 7:04:55 PM)
have you been sraight with him and told him how you feel?

Brenda (Jun 21, 2009 7:05:15 PM)
ya

beckdildal (Jun 21, 2009 7:05:41 PM)
and he needs to hear what the doctors have to say as well. always better to have 2 ears listening.

beckdildal (Jun 21, 2009 7:06:13 PM)
that's my advice, not to say i always follow it,,lol

Brenda (Jun 21, 2009 7:06:27 PM)
ya he was with me for some of the apts , he was still in navy when i was at some

Brenda (Jun 21, 2009 7:06:33 PM)
lol

beckdildal (Jun 21, 2009 7:06:35 PM)
i'm stubborn and independent to so i tend to want to do for myself

Brenda (Jun 21, 2009 7:06:40 PM)
i hear ya

Brenda (Jun 21, 2009 7:06:48 PM)
me too

Brenda (Jun 21, 2009 7:07:19 PM)
im the kind that said i can i will and hate to ask for help

beckdildal (Jun 21, 2009 7:07:25 PM)
i've got to get ready to go see my sis tonight

beckdildal (Jun 21, 2009 7:07:40 PM)
she invited us over for salmon

beckdildal (Jun 21, 2009 7:08:05 PM)
it's been great chatting with you and i'm glad you stopped by

Brenda (Jun 21, 2009 7:08:23 PM)
thats nice , take care thanks for the chat hope to talk to u again take care of you too

beckdildal (Jun 21, 2009 7:08:40 PM)
you hang in there and i hope that you get some answers real soon. come again!

Brenda (Jun 21, 2009 7:08:55 PM)
ty have a good one

beckdildal (Jun 21, 2009 7:09:12 PM)
bye

Brenda (Jun 21, 2009 7:09:16 PM)
cya

beckdildal (Jun 21, 2009 7:09:18 PM)
(This user has left DigiChat)

Brenda (Jun 21, 2009 7:09:21 PM)
(This user has left DigiChat)